Knowing when to choose hospice care is a challenge; that's highlighted by Rosalynn and Jimmy Carter's end-of-life journey

National Institute on Aging infographic

"The death of former first lady Rosalynn Carter on Sunday, and the survival of her husband, former president Jimmy Carter, have exposed one of the most achingly difficult questions faced by people with life-threatening illness: when to choose hospice care," Lenny Bernstein and Dan Keating report for The Washington Post.

Carter, who was 96, died two days after entering hospice. Jimmy Carter entered hospice in February at the age of 98, outlasting the six-month prediction of life that is typical of people when they enter hospice care. 

Rosalynn Carter (2005 Associated Press photo by Ric Feld)

Rosalynn Carter had a urinary-tract infection that was not responding to antibiotics when she entered hospice, which experts told the Post is among the many reasons people with dementia might switch to hospice care late in the course of the disease. 

Bernstein and Keating report that many people follow the same path. 

" About half of all people are in hospice at the end of their lives, but more than 25% of hospice patients enroll in the final week, according to 2021 data from the Medicare Payment Advisory Commission, which advises Congress on Medicare issues," they write. 

Others among the 1.7 million Medicare patients who used hospice that year used the service much longer, they report, with a median stay of 17 days and ab average stay of 92 days, "which shows that some patients were in hospice for many months."

Angela Novas, senior medical officer for the Hospice Foundation of America, a nonprofit organization, told the Post that Rosalynn Carter’s experience is not uncommon.

“When people are that age and have a chronic condition like dementia that is progressing, and progressing slowly, there comes a turning point where suddenly the symptoms accelerate exponentially,” Novas said.

Doctors also play a role in delays in enrolling because of "difficulty prognosticating" and patients often wait, hoping for a final experimental treatment to become available, Mamta Bhatnagar a University of Pittsburgh Medical Center physician who specializes in hospice and palliative care, told the Post.

The first U.S. hospice opened in Connecticut 49 years ago, but there is still considerable confusion about end-of-life care options, caregivers and experts told the Post. 

"People who choose hospice agree to give up therapeutic efforts to prolong their lives and focus on comfort and quality of life. Two physicians must attest that the patient has six months or less to live. The period can be extended, and patients can change their minds about being in hospice at any time," the writers report. "Hospice is most often provided at home, but “home” can be a nursing facility, a hospital or a free-standing hospice center, among others. The latter are increasingly run by for-profit companies but also are operated by nonprofits." 

In contrast, “palliative care” or "comfort care" aims to make patients more comfortable and ease stress but can be done while doctors are still seeking to cure a disease. 

Added to the confusion, the authors write that sometimes life-prolonging and palliative therapies can overlap, such as the use of diuretics for people with heart failure or radiation to relieve pain by shrinking a tumor. 

Myths and fears about hospice still abound, Joan Teno, a Brown University hospice physician and researcher, told the Post.

"Doctors and advocates said they still hear from patients that hospices are where patients are killed off, usually because of the use of morphine to relieve pain in end-of-life care. Others think that the hospice team will take over completely and that family can leave the responsibilities of caregiving to them," the authors write. 

“There’s very few people who say, ‘I wish I had started hospice later,’” Ben Marcantonio, interim CEO of the National Hospice and Palliative Care Organization, told the Post.

End-of-the-year holidays produce a surge in calls about hospice when families gather and physical and mental decline can become apparent, Novas told the Post. The Carters have provided a lesson in what to do next.

“The Carters are doing a fantastic job in continuing to educate us,” Novas said. “Throughout their lives, and now in their deaths, their legacy will be teaching us about mental health and how to live and how to die well.”

People seeking advice about hospice can contact the Hospice Foundation of America’s Ask an Expert service at https://hospicefoundation.org/Ask-HFA [hospicefoundation.org] or by calling 202-457-5811 or 800-854-3402. 

The Kentucky Association of Hospice and Palliative Care can be reached at 888-322-7317 or found online at kahpc.org. 

Most people have end-of-life wishes, but don't talk about it; planning for death is less likely in rural areas, study finds

St. David's Foundation graph; click on it to enlarge.

As America ages, more families face end-of-life decisions, and rural Americans are less likely to have their wishes known or followed by family members, reports Liz Carey of The Daily Yonder. "A new study found that while most people have end-of-life wishes, only a little over a third of them actually get them fulfilled. That is even more true with rural residents, researchers said."

Researchers from St. David's Foundation in Texas found that when it comes to end-of-life care, most Texans want to die at home (76%) and not be a burden to their families (77%). "But only one in three people surveyed said their loved one's wishes were honored," Carey writes. "Of those who are least likely to have their end-of-life wishes followed are rural residents, the study found. . . . Only 37% of the survey respondents said their loved ones died at home. Close to half of them (47%) said their loved one faced challenges related to their care – from problems with insurance coverage to facing cultural or language barriers."

Honoring a person's wishes begins with knowing what they are. Andrew Levack, senior program officer with St. David's Foundation, told Carey: "One of the interesting things the study found was how few conversations respondents had with their doctors around plans for end of life. I think people have an idea of what they would like, but it takes some active planning and advocacy to make that happen."

Study researchers noted a common thread of disconnection across the state -- people have end-of-life care desires, but don't voice them. "Most Texans, even older adults, are unprepared for decisions about end-of-life care. The vast majority believe it is important to have their wishes in writing, yet over half have not done so. Similarly, many say they would like to discuss end-of-life planning with their health care provider if they were faced with a serious illness, yet only 17% have had a provider initiate a conversation about it."

Geographical isolation and a lack of health care access make rural populations more likely to not have end-of-life plans or discussions. Dr. Kate Tindell, medical director for Austin Palliative Care and Hospice, told Carey: "People have really disjointed health care now. We've sort of lost that sense that there is a captain of the medical ship who is aware of all the moving parts and is giving the patient that guidance. I think that really causes people to not have the kind of relationship that would allow them to have that kind of conversation (about end-of-life wishes) the way they would if they had seen the same provider every single time for 10 years."

Medical cannabis bill passes Senate, awaits House vote March 30

By Melissa Patrick
Kentucky Health News

A bill that would make medical marijuana legal for some in Kentucky has passed the state Senate for the first time and awaits a vote in the House, which has passed two similar bills in previous legislative sessions.

Sen. Stephen West

"It is time for Kentucky to join the other 37 states in the United States that allow medical marijuana as an option for their citizens," said Sen. Stephen West, R-Paris, in presenting his bill to the Senate, adding later, "It is understood that this is a very complex issue and if passed, will be a work in progress." 

Senate Bill 47 passed late Thursday night on a 26-11 vote. The House gave the bill its first of three required readings the same night, which will allow enough time for it to pass out of the House when the lawmakers return March 29 and 30.

Last year, after a House-passed bill again got no hearing in the Senate, Gov. Andy Beshear used his pardon power to allow people with 21 specified medical conditions and a doctor's certificate to possess up to eight ounces of marijuana bought legally in another state. (Illinois is the only adjoining state where nonresidents can legally buy cannabis.) Beshear signaled Thursday that he would sign the bill.

West, who said he has worked on such legislation for about five or six years, told the Senate, “This is one of those issues where you take out the ledger and you list the pros and cons. It’s a long list on both sides, but for me personally, the pros outweigh the cons.”

The 124-page bill would not allow medical marijuana to be smoked, require users to be 18 or older or be a caretaker for a child, limit supply, and not take effect until Jan. 1, 2025.

The medical marijuana would be allowed for certain "qualifying medical conditions," including all cancers regardless of the stage; chronic, severe, intractable or debilitating pain; epilepsy or any other tractable seizure disorder; multiple sclerosis, muscle spasms or spasticity; chronic nausea or cyclical vomiting syndrome that has proven resistant to other conventional medical treatments; post-traumatic stress disorder; and any other medical condition or disease for which the new Kentucky Center for Cannabis Research at the University of Kentucky determines would benefit from medicinal marijuana.

West and other lawmakers praised the advocacy of Eric and Michelle Crawford, a quadriplegic who has long searched for another option to manage his pain. They also praised the ongoing work of advocate Jamie Montalvo, who suffers from multiple sclerosis, toward getting this bill passed. 

 Sen. Phillip Wheeler, R-Pikeville, said the Crawfords and Montalvo don't want to break the law: "These are people that are willing to work hard and make sacrifices to comply with the law. What they are looking for is a pathway forward to make sure that people can get a safe product." 

Sen. Stephen Meredith, R-Leitchfield, said it was important to show those who are suffering from  debilitating diseases  "just a little bit of mercy" and that was why he voted yes.   

“Will this be abused by some folks?  It certainly will," he said. "But again, if we can benefit just one person, one child, I think it’s worthwhile."

Only Republicans voted against the bill: Gary Boswell of Owensboro, Danny Carroll of Benton, Donald Douglas of Nicholasville, Rick Girdler of Somerset, President Pro Tem David Givens of Greensburg, Chris McDaniel of Ryland Heights, Robby Mills of Henderson, John Schickel of Union, President Robert Stivers of Manchester, Mike Wilson of Bowling Green, and Max Wise of Campbellsville. 

Marijuana is a "scourge of the earth," Boswell said. "I urge my colleagues to vote no. If you are going to violate federal law, at least tighten up the bill to include only the critically ill." 

Douglas, a physician, said, “With the different growing techniques and the increased concentration of these chemical compounds, I’m not really convinced that this drug is safe. But we do have some research going on out there, and I really want to thank the University of Kentucky. I hope we have some other institutions doing research who will give us good information.”

Senate President Robert Stivers, leading foe of medical cannabis in Kentucky, suggests he could be for it in end-of life cases

By Al Cross
Kentucky Health News

State Senate President Robert Stivers suggested Monday night that he might be willing to approve medical marijuana in Kentucky on a very limited basis, to relieve patients' pain at the end of their lives. But he cast fresh doubt on whether relief actually comes from cannabis, or rather from expectation that it will.

"I am working with others see how we could get to a 'yes' to take care of those who are at the end of life," Stivers said on KET's "Kentucky Tonight." It was the first sign of compromise on the issue from Stivers, who has been the major obstacle to medical-cannabis bills passed by the state House.

Robert Stivers (file photo)

"I've seen family members go through cancer treatments; in no way do I want to be unsympathetic," Stivers said as he began discussing the issue. After repeating his desire to see more research on it and making other points, he said the use of cannabis in palliative care can easily be defended under the old "choice of evils" principle of English common law. In such cases, "I don't think you would ever be arrested; I don't think you would be convicted," he said.

A Manchester attorney, Stivers briefly noted without explanation a National Geographic story published online Jan. 6. It cited a study that found "67 percent of the relief from pain reported by people treated with cannabinoids was also seen among those who received a placebo," Meryl Davids Landau wrote for the magazine. "This suggests that the pain reduction was not due primarily to compounds found in cannabis but to people’s expectations that it would help. And that positive expectation was based in part, say the authors, on over-enthusiastic media coverage. Reputable studies so far have not found that cannabinoids sufficiently reduce pain, which led the International Association for the Study of Pain in 2021 to decline to endorse these drugs."

Even as he cast new doubt, Stivers suggested what a medical-cannabis system could look like. He said the state could require names of all owners of cannabis dispensaries to be public, "to prevent abuse," and have a computer network to monitor cannabis prescriptions and how the drug is ingested, saying marijuana smoke has 50% more carcinogens than tobacco smoke.

Last year, after the Senate again declined to take up a House bill that would have legalized medical marijuana, Stivers pushed through a bill for cannabis research at the University of Kentucky. "There's indicators out there that certain things are helped," he said on KET. "Let's research the issue."

After last year's legislative session, Gov. Andy Beshear named a group to study the issue, then used his pardon power in an executive order allowing people with a medical provider's statement saying they have at least one of 21 specified medical conditions to possess up to eight ounces of cannabis for medical purposes in Kentucky, if bought legally in another state.

Cannabis is not legal in Indiana and Tennessee, and the medical-cannabis laws of Ohio and West Virginia do not apply to out-of-state residents. Missouri and Virginia have passed laws to legalize cannabis for recreational use, but the Missouri law is not expected to take effect until at least February, and Virginia is not expected to have cannabis dispensaries until next year. That means Illinois is the only bordering state where Kentuckians can use Beshear's order.

Beshear, a Democrat seeking re-election, says the better alternative to Illinois would be passage of a medical-cannabis law by Kentucky's Republican-controlled legislature. But leaders in the two chambers disagree on which one should deal with the legislation first; House leaders say it should start in the Senate, since their chamber has passed it twice, but Senate Majority Floor Leader Damon Thayer of Georgetown says the House should still go first. Stivers did not give his opinion on that point during the KET program, which touched on several legislative issues.

Some Democratic House members want the legislature to offer voters a constitutional amendment on the issue, but Stivers said some of the UK research "will be back before the constitutional amendment could even go on the ballot" in November 2024.

KET program, airing Monday night and online afterward, explores how to die a better death, with a focus on palliative care

The World Health Organization describes palliative care as

"an approach that improves the quality of life of patients and

their families facing the problems associated with life-threatening

illness, through the prevention and relief of suffering by means of

early identification and impeccable assessment and treatment of

pain and other problems, physical, psychosocial, and spiritual."

A Kentucky Educational Television program will examine some moral questions surrounding death, including how to approach medical treatment when you are at the end of your life. 

The program "Horizon: How to Die a Better Death," is presented by Dr. Kevin Fong, who explores what it means to die a better death and shows how palliative care, when done right, can help individuals achieve that goal by shifting the focus from cure to care.   

Fong talks to medical professionals and people who are near the end of their lives and explores how individuals should approach medical treatment when they are dying.

The documentary will air at at 9 p.m. ET and 8 p.m. CT Monday, June 21; and 4/3 p.m. Thursday, June 24 and Sunday, June 27 at 4/3 p.m. KET program are also available at www.ket.org.